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Chapter 7 examines how international patient movements, inspired by organizations in the USA and Western Europe, have come to see ‘de-regulation’ as a way to accelerate the translation of science into marketable medical products. But in research abroad and an international meeting hosted in the UK, conversations with international patient organisation (health organisation) representatives for Muscular Dystrophy (MD) and Spinal Cord Injury (SCI) and patients from Asia, Europe and the USA shed different light on this. Discussions show that, in a world characterized by regulatory capitalism and inequality among countries, ‘de-regulation’ cannot ‘save’ patients through increased access to experimental medicine in the same way. For, the performance of regulation in a country is contingent upon the material and organisational resources available to health organisations and the population in general in a juridical mandate. The politics of redemptive regulation in international health movements risks reconfiguring healthcare developments by a misrecognition of actual patient needs and local practices. This chapter further raises questions about the potential benefits and costs of regenerative medicine to various patient groups in societies with different standards of wealth, welfare and political governance.
Introductory and regulatory capitalism, and it outlines the methodology and the chapters. On the basis of a discussion of the notion of ‘regulatory violence’ in the context of various relevant legal, political, philosophical and criminological literatures on regulation and violence, I propose to define regulatory violence as the forseeable and possibly preventable violence that obtains when regulation is created and applied for reasons that are illegitimate. In the field of regenerative medicine, this means that when research regulation is developed for reasons other than patient safety and scientific development, it is likely to cause foreseeable harm to patients, the development of science and the public at large. Although in a world dominated by regulatory capitalism, regulatory competition is a main driver of regulatory adjustments, regulatory violence is not unavoidable: some countries manage to change regulation by prioritising patient needs and high-quality science. The Chapter also discusses the challenges involved in regulating the safety and scientific quality of clinical research and the marketing of new regenerative therapies and the main arguments for moving from ‘competitive desire’ to ‘caring solidarity’.
International case-studies on regulation and science collaboration show how competition and economic pressures on the national regulators of biomedicine condition the development of jurisdictive regulations. But regulation that fails to guarantee a jurisdiction's optimal protection of patients and scientific research in favour of other interests commits foreseeable and avoidable “regulatory violence”. Even when well-intended, regulation gets caught up in the intense international competition to support public health and generate national wealth, with real-world implications. Evidence from Asia, Europe and the USA challenges the belief that regulation improves ethical practices in regenerative medicine, connects practitioners with good science, and protects patient safety. This book explains why this is so, and points to ways in which science could help us address healthcare issues in greater solidarity. This title is also available as Open Access on Cambridge Core.
International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices.
Method:
A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information.
Results:
Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.
Significance of results:
As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.
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